I am not a complainer. But when I tell you that I woke up feeling half way to crippled today is bad. I’m still upbeat shiver ice cream down my throat to cope with my day but I am in pain. If this invisible monster hijacking my body is not Lupus, or Sjogrens but fibromyalgia, bitch won today. I have felt so much pain in my knees and in my body it feels sort of like my body is pulsing. It’s sharp like lightning running down my wrists to my fingers, and on my feet up to my ankles. My knees are just screaming in pain.
I half way decided I wanted to join yoga although I’m still part way dismissive. But something has to give. By the time I’m 40 I’m going to need a cane or a power scooter. That I will not allow. I fight and today I’m fighting like hell. The worst part for anyone battling autoimmune or related illness is that outside you look okay. Inside it’s like a category 5 hurricane waging war. Today is one of those days. If you know someone battling this silent war be nice, be gentle. They may not complain, scream or shout or show signs of pain. But I can promise you that the pain is as real as falling out of a moving car.
I haven’t been talking much lately because I’ve been trying to cope with my body telling me to screw off. That’s been quite a feat. I was supposed to get a secondary exam to decipher whether I had sjrogens or lupus. At this stage I just want to make it through the next few months. My work is slipping severely. Today I asked my boss for something she had clearly given me. I had no idea. The fatigue was so strong I litterally fell asleep sitting in my chair in the middle of an affidavit. This is despite the fact this weekend I pretended my legs were broken and I pretty much stayed in bed. My legs did feel broken. In fact the moment I stood up my feet felt like they had been holding an elephant and couldn’t. So I did. The minimal. Sunday I cleaned up a bit. Yesterday I called out sick because I was super naseous and just sick the night before. Truth is it was a combination of that and the fact I physically couldn’t get up because my bones felt like they were cracking like a wish bone.
Of course I don’t mention that. Because people don’t get it. They see you looking fab and the same outside and have no idea there is a war going on inside. One your usually losing. I was losing miserably. In fact I lost. So I stay quiet. What is the point of trying to explain to people when they don’t understand? It’s not malicious it’s just they don’t get it. The pain I’ve had in my hands the past 2 days is ridiculous. It runs from my knuckles down to my fingertips. From my wrists almost down. I haven’t lost my sense of humor or my ill manipulation skills if you think that’s holding me down. I’m just running at a slower pinky and the brain speed, that’s all. I proved it to myself today that I’ve still got it. So one win for a bunch of flighty moments.
What can I do? Life is short. At this point I just shrug my shoulders and call it a day.
Today was difficult overall. It started like a crazy hectic day from the moment I walked into the office. I took it in stride and then it all went downhill from there. My father racked up a few thousand dollars in international charges. I have been paying it down slowly but its affecting my lines. Then, I received a notice that because I forgot to schedule a payment they were going to turn off our lights. That was hard. I made the payment but this all happened in a span of a few hours/minutes from each other. I wound up taking lunch not doing my homework for class and just walking out and sitting in the church next door for 20 minutes. I needed peace, I needed solace.
I’ve been on my medication for the SLE for about a week. Its hard, I sometimes forget, and I don’t feel all that well. I feel tired and most of all achy. It varies on the severity. I stomp around the office trying to work and focus, but some moments my focus isn’t there. My focus is on the pain in my fingers and ankles or wrists and not on what I’m working on.
I compare this revelation of the SLE diagnosis to driving your entire life at 100 mph and slamming the brakes at once and now driving 30 mph. I’ve been trying to figure out my life and figure out what to do with myself. I was and always have been driven but now in the face of my own mortality, I am questioning what I want. All the money I wanted won’t fix what I have. It will make me happier in a lot of regards but it won’t cure me. As I sit here typing, I am thinking about my school work. I have to do something today but the truth is that I just want to sleep and maybe try to sneak in a game or two..
Today was stressful but tomorrow is another day… live to fight another day..
When I was younger in my late teens, my parents became friends with this lady who had a daughter that was wheelchair bound. Her daughter had lupus. She was the first person I ever knew had that. For a while I’ve felt like utter shit. I’ve woken up struggling to get to work to get dressed to function. Pain in my bones that felt like my bones were snapping. Last week I had a bad week. That’s the shit. I don’t feel bad all the time. Just sometimes. Last week was bad. Friday I was miserable. I hadn’t slept well because I had pain in my body to the point I couldn’t sleep. I went to work and it was just a shit day.
The thing is that it’s hard to explain to others what you feel. Not because I can’t express myself but because they wouldn’t understand. I was enraged when I recently found out that I might have lupus or rheumatoid arthritis. I was enraged because this is exactly what I’ve been begging doctors to test me for. I don’t feel good. I feel tired. My joints hurt incredibly. No you’re okay. You’re a mom, a student, an employee.
Well I’m not okay. I hate pity parties. At this moment I’m sort of basking in one as I process what this means for me. Law school? Legal pressures? Can I have a longstanding legal career with its stress since stress is something that I need to reduce? I feel like Dorothy’s house flying around the eye of the storm. I was angry for a moment. Angry that I have to go through another challenge after all of the challenges I have faced. I know I’ll get over my pity party. I know I’ll keep trucking. I just have to reach that point where I’m okay.
My significant other is clueless. He seems to think people on the train are my biggest stressors. No he is, work is. I feel unsupported but the hardest part is that I feel misunderstood. That’s the killer. I feel like no one understands what I feel and it’s hard because it’s something your battling in silence. It makes you feel isolated.
You’re legacy is whatever your decisions,choices and paths you decided to take. You can leave behind a great legacy or a disaster in your wake. The one thing I always wanted was to leave a trail of fire in my wake, not a blaze of destruction but a blaze of powerful influence. Like all things in life, you can use your gifts for good, or you can use your gifts for bad. Facing my own mortality and thinking about the future is both enlightening and frightening.
Right now, my fears in their own way have come out of their closet. I’m battling my own health issues and thing not to let them hold me down. I’ve decided to bask in my own sadness for a moment before I pick myself right back up. I never discourage people to not feel what they feel. Bask in your emotions good or bad because they are yours. There are no right feelings to feel when shit goes south, when you get bad news. The only bad reaction is to not bounce back. You have to. There’s no other choice but to stop crying eventually and keep fighting to see another day.
Today I got news that made me realize that the fire that I storm everything in my life with is fully ablaze. It was the most powerful news for me that I could get. You see, somewhere that I thought I was never appreciated, it turns out that my hard work and due dilligence paid off. I was used as an example. The fact is that I work damned hard to make sure I’m the best at everything that I do. If I plow shit for a living I’m going to be the best damned shit plowed that ever was.
The notification that I got today lifted my spirits from the depths of despair that I was living with fear and worry about my health. It made me once again remember that I’m going to law school. I’m going to ignite an even bigger blaze in my path before my candle blows out in the wind.
With all the things that my dad is going through health wise, I decided to suck it up and go see a doctor. It turns out that my PCP who I love and reminds me of the little man from UP has retired. I’ve been mourning him for 2 weeks now. What really pushed me to seek medical help was I got food poisoning the week before last, then I wound up with some viral cold/flu that kicked my ass and had me towing crossing over. I admit, after my time working for a personal injury firm and seeing hospitals in New York failing epicly, I’m sketched. The bulk of my treatment and my daughters is in Long Island with surgeries in Manhattan and Long Island. I’ve never been treated by doctors out on the other boroughs that are affiliated with any local hospitals. Its not to say that there aren’t amazing doctors, but the level of care is just vastly different. NYU compared to Woodhull before the purchase. If you don’t know, once upon a time, Woodhull was a nightmare. You might check in, crap shoot if you check out. You couldn’t pay me to check in there.
So the moral is that I know better. I don’t get injections from basement doctors or get medicines out of zip lock bags. Normally, I do my due diligence. When I was super sick last week I decided to call a doctor because I really felt like I was dying. I got ahold of an office that scheduled me for a week later. Mind you, I had searched for a PCP in my area. Time passed I showed up to my appointment yesterday. Of course, it wasn’t drama free. I looked like a crazy person exchanging words with the car service that picks up my dad from dialysis. My dad called and they were an hour late, telling him they’d be there in 15 minute increments. By the time I was done I had ripped them a new asshole and threatened them if something happens to my father in his condition.
I proceeded to go into the office. Hindsight is amazing. I filled out the paperwork which was unremarkable and waited patiently. When I was called in I gave the nurse my entire history. Food poisioning, etc. when the doctor came in I gave him the same run down. He asked if I had anxiety, I told him that it’s possible at this time. Long story short he proceeded to tell me to strip down and put on the gown. They were going to run a panel for HIV, STD’s and thyroid. This should’ve been my first clue that something was off. In fact for a minute I paused and repeated his instructions. Yet, I still sat down waited for him and the nurse to return and had a vaginal exam.
I went to work and told my bestie about it. She was hilarious because her first question was if there was a nurse present. I responded yes, I don’t think I was molested. Long story short, I had not made an appointment with a PCP. It was an ob/gyn. No wonder he was like okay crazy person, when I proceeded to give him my entire medical life. Today, I was cleaning out my bag and found the business card. Sure enough further evidence that I had gone to an OB/GYN. What throws me off is that the person that scheduled me could hear that I couldn’t talk. I had a hell of a sore throat and told her I was coming in because I was so sick. Maybe she thought I was pregnant and dying of a cold but we were clearly both mistaken… and that’s the story of how I got my vajajay checked when I was really trying to treat a god damned cold…
I’ve had moments of insanity. I call it insanity because for me personally children are cute but even better when they go home to someone else. I have occasionally thought about giving my daughter a sibling. For health for life a sidekick to share life with. I love my kid. She’s smart, hilarious, ambitious and the list can go on. But I would be lying if I said I didn’t have days this week I wanted to get my passport and sail off into the sunset without her. Does it make me a bad mom? I don’t think so. In fact, I think it’s normal to think that and feel that way. I think women tear each other up over feeling like this but I think more moms think this than they let on.
I am an only child. Because of this everything falls on me. I’m not complaining but what I am saying is it’s hard. It’s hard to juggle your life and become your parents caretaker. No one tells you these things. You go to college think about a career but who prepares you for your parents ailing health. Was it a given? Did I skip that lecture? If I had a sibling maybe I wouldn’t be playing circus like I am right now.
This is what makes me feel like I should’ve given my daughter a sibling. So that the day I am gone she is not alone. So that the day I am not well she has someone to help support her through it.
Because life is hard. There are no easy choices, and even harder challenges await and as the adage goes: “life waits for no man.”